TBI S-O-S! Restoring a Sense-Of-Self after Brain Injury and Concussion

About

Please Note: I am not a doctor. I do not have medical qualifications. I do not even have a completed college degree (only after I realized how deeply and invisibly TBI had affected me my entire life, could I explain why I attended 4 years of college, albeit sporadically, but couldn’t manage to get a degree). I am simply one individual who has learned how to live very effectively and even happily with the after-effects of multiple mild traumatic brain injuries. All I can offer is my own insight and experience to others like me, in hopes that it will help them live their lives more fully and with greater joy and satisfaction. If you believe you have had a TBI, please see your doctor and/or another qualified medical professional.

About the Blogger

I am a long-term (mild) Traumatic Brain Injury (mTBI or TBI) survivor who has been living very successfully with cognitive/behavioral (social, emotional, functional) symptoms and complications for 35 of my 43 years. I’ve done it so well, in fact, that virtually nobody knows that I sustained injuries at age 7… and 8… and 14 and 16 and 17 and 22 and 24 and 30 and 39… and the folks who do know, haven’t fully realized just how it’s impacted my life. (You can see my catalog of injuries that I can remember here)

I have a pretty active life, overall, provided that a lot of the activity is online and relating to my own hobbies and interests: writing, drawing, painting, research (esp. TBI and neurodiversity), music, and more. I am the Executive Producer of a broadcast program that goes out weekly across the nation, and internationally. That’s one of the reasons I do not speak with a great deal of specificity about my personal life and the people in it — I do not wish to endanger either my public persona (we all artificially construct our public personas, after a fashion — pretty much everybody knows this, or else they’re deluding themselves) or compromise the integrity and validity and acceptance of the programming I help to create each week. There’s just too much bias about TBI out there, and I don’t feel like dealing with prejudice, when I can just get my work done.

I make a point of hiding my “disability” from others — both because I don’t want to be stigmatized, and I don’t want to be pitied or treated like an invalid. It’s really a point of pride with me, that almost nobody knows I have had multiple mTBIs — unless I’ve told them. And when I’ve told them, they frankly didn’t believe me at first.

My mTBIs have impacted my life, however. In serious and debilitating ways. I’m coming out from behind the shields I’ve put up, now, in hopes of successfully addressing my own (invisible) challenges and helping others to see that sustaining a TBI is not the end of the world, and they can, in fact, live happy, fulfilled, productive lives in spite of it all.

About this Blog

My mission with this blog is:

To reach out to the millions of individuals (5.8 million, I’ve heard) who have sustained a TBI, along with their friends, family, and co-workers, to help them better understand traumatic brain injury information from a “lay person’s” point of view. There is a vast sea of medical research and clinical findings available about TBI, not to mention studies, facts, and tons of websites, but it’s often confusing and can be very disorienting. Having a personal “take” on all of it, might just help to humanize this scientific information and make it accessible to the people who need it most — the folks who are living each day with the after-effects of a traumatic brain injury. I hope that in reading this blog, they may be better informed about TBI and quit being so hard on themselves and others, quit being so frightened of this manageable condition, end the silence around cognitive-behavioral issues that are neuro-physiological in nature (not due to some “character flaw”).

To share my personal experiences with other TBI survivors and their families, to help them overcome the feelings they may have of wretched brokenness, to let them know they are not alone and help them see that a broken brain is not the end of the story, so long as your whole body-mind-heart-spirit “information-processing system” is intact. There is more to us than what’s between our ears, and we can live full and satisfying lives, even if they are turned upside-down by forces beyond our neurological control.

To relate my experiences to the psychotherapists of the world, who may be chasing the wrong demons in their counseling sessions, trying to fix “psychological” issues of TBI survivors which are actually neuro-physiological in nature, and help these therapists address the very real emotional/cognitive/behavioral/social issues which plague TBI survivors, often in secret, often hidden behind thick, high walls of shame, fear, guilt, and anxiety. There is a lot to be done in this domain, but folks need to understand the real issues we TBI survivors face, before they embark on diagnostic and treatment courses of action that serve mainly to frustrate and discourage us, and make us feel even more screwed up than we really are.

To assist our men and women in uniform, returning from active duty, who have sustained a TBI in service to this great country of ours, and who are left out in the cold by a medical and psychotherapeutic establishment that often does not understand or fully appreciate their challenges and needs as TBI survivors.

To celebrate my successful long-term survival from a TBI and show others how I did it… and how I continue to do it, so they can have hope and, in the words of Winston Churchill, “Never, ever, ever give up!”

My Confidentiality/Privacy Policy

The world is not often friendly to those of us dealing with TBI — either as survivors ourselves, or as family/friends of survivors. The information we reveal about our own situations may be used against us in professional, social, and legal situations, and it can be used to disqualify us from participating fully in the world. This is a damned shame and fundamentally unfair and unjust, but that’s just how it too often is.

In order to keep the identities of people (including myself) safe and sound, and to not let personal details get in the way of the over-arching mission of this blog to educate and offer hope and resources to others like me, I tend to change the personal details of the people I talk about — this includes myself, my family, my friends, my coworkers, my doctors, my therapists, my inner and outer circle, pretty much anyone and everyone I encounter. I may (or may not) change their gender, their age, their place in my life, the circumstances in which I interact with them, etc. I do this NOT because I am ashamed of myself or what I’m going through or the difficulties and challenges I face each day. I do it because this educational/outreach work is more important than any personal opinions, details, or other private particulars. And it needs to be done.

So many of us are suffering in silence, feeling alone and isolated, and the sensitivity of our own confidential situations can work against sharing information. That should not be. We have a tool to overcome the boundaries and barriers between us — that tool, ironically, is total and complete personal confidentiality and the ability to disguise or change sensitive personal information in the online world. By revealing less about ourselves and what sets us apart from others, we have the chance to reveal more about what brings us together.

I do not want the sensitivity of personal details to prevent me from passing along vital information which may be of use to others — Principles Before Personalities, you might say. And so, I take some liberties with how I portray my personal circle, as well as myself.

I found your blog over at http://tneria01.wordpress.com/, and I’m linking to it from this one, as well. The more information we can spread around about TBI and how to not only survive it, but thrive in the process, the better!

Thank you for visiting my blog. I found the link about your inability to comment through technorati, and promoted your comment. I hope a few of my readers visit your corner of the universe, and stay to learn.

My heartfelt wishes for your continued success in fighting this injury.

I am so happy to find this blog. I am the wife of a mtbi survivor and have been dealing with this issue for all of our marriage. It seems to be getting worse. One of the worst issues we deal with is the extreme temper. I try to be understanding but it is SO hard not to take things personally. I feel that our marriage is falling apart and worry for my children. They are seeing these flare ups and it is so hard to explain to them that it is not normal. I think because he is so frustrated, he takes it out on me with verbal abuse, personal attacks and a lot of yelling. I feel conflicted – wanting to show my daughters that they should never let a man treat them this way but also to have compassion for their father. Please continue to write more – I hope it can help me in my understanding.

I really feel for you and your kids, and I also feel for your husband, who may be pretty confused about what’s going on with him, and unable to control his behavior, but is afraid to admit what’s going on with him. Having a TBI can really scramble things, and in my experience, not knowing just what’s going on in your world can heighten sensitivities and make lots of things worse that are already bad to begin with.

One of the big problems I’ve had is, just not knowing about my limitations. I cannot tell you how many times I’ve done things that I would not have done, had I been aware of my cognitive processing problems. I would not have taken certain jobs, I would not have gone into certain social situations, I would not have tried to go it alone in many tough situations which eventually involved lawyers and police (I survived unscathed, I’m happy to report). I’m not trying to frighten you — my adventures have made me smarter, but they also were ill-advised. I just didn’t know my own limits. And I wasn’t willing to accept them.

This came (at least in part) from a lifetime of fearing being treated differently because of some mysterious reason I couldn’t put my finger on. I always had the feeling that others were either a little afraid of me or felt a little sorry for me or they were coddling me and trying to treat me like a “retard”. I fought against that tooth and nail my entire life, and in the process I took some risks I really should not have.

I think things might have been different, had the people closest to me understood about TBI and been able to adjust to the affect it had on me. Knowledge goes a long way, and when it’s coupled with experience and insight and patience, it can become wisdom. If there were one thing I could say to you (and anyone who’s living with a TBI survivor, recent or otherwise) that I think would have helped me as a TBI survivor, it would be:

1. Learn everything you can about the one(s) you love with TBI. Knowledge is the best weapon in what is often a war. And being armed with good knowledge and information — as well as a support network — enables you to be strong and solid for the ones who need your support the most.

2. Please be patient and don’t assume that we “walking wounded” are intentionally trying to be difficult. Sometimes we have no clue why we are doing what we are doing, and our minds can tell us that something completely different is happening, than what really is. This can be very disorienting, and it can trigger panic and anxiety and all sorts of adrenaline rushes that make us act impulsively — in ways that aren’t always helpful. BUT NO MATTER WHAT, VIOLENCE IS NEVER AN ACCEPTABLE WAY OF INTERACTING WITH THE ONES WE LOVE. If a TBI survivor in your (or someone you know’s) life is acting out violently, you/they need to seek help for this — and address it appropriately, taking the TBI into consideration.

3. Inside this often impassive exterior is someone who is hurting. We can spend so much time trying to mask the hurt, that we end up looking like “blocks of wood”. Or the hurt can be so deep that it keeps us from fully knowing *what* we are feeling. Or that hurt can sometimes come out in scary ways – it can sometimes look like we’re angry, it can sometimes look like we’re intentionally being aggressive — but it can be difficult for us to modulate our expressions. In situations like these, what works best for me is a simple gentle (but firm) reminder of how I *should* be acting, not how I shouldn’t be behaving. Being shamed for not exhibiting the “right” reaction is not helpful for people like me.

4. Things change over time. The effects of TBI may heal, or they may not, or they may partially resolve. But things will change. Stay rested, stay hopeful, stay strong. The skills we develop in dealing with TBI have a way of helping us do a better job of dealing with the rest of the world, as well.

5. We always have a choice about what we can do in response to our life situations, and we always have the right to say “NO” to unhealthy and unsafe situations. That goes for TBI survivors, as well as their loved ones. Your partner has the right to say “No, I don’t want to go out to dinner with ____ tonight,” if he is over-tired or needs some downtime to regain his balance. And you have the right to say, “No, I don’t want to be talked to in that way,” if you feel like he’s being unkind or insensitive (but may not realize it).

We live in a society that unfortunately does not want us to take really good care of ourselves. It makes a lot of money off us NOT taking good care of ourselves. Our stores are full of non-nutritious foods, our schedules are full of busy-ness, our workplaces (if we’re lucky enough to have a job, these days) are hectic, and our main passtime — television and movies — are specifically designed to trigger parts of our brain that make us emotionally volatile. (Advertisers and marketers use lost of color and flashing lights and sound to trigger our emotional centers and prompt us to buy-buy-buy, which gets that part of our brains all worked up — and for a TBI survivor and their family, that can get folks more agitated than is helpful). And when we are run down, we’re sold medicines and other things that are meant to make us feel better for the short term… but have long-term consequences. I guess my point is really that the average person has to work pretty hard at keeping well and healthy — and when TBI is involved, there’s even more work involved.

But we have every right to say “NO” to things that do not serve us, that make us less healthy, that stress us out… even if everyone else is doing them. And we have every right to say “YES” to the things that do help us — reliable health information, strong support, lots of rest, good nutritious food, vitamins, exercise, community, family, loved-ones, work that gives us dignity not pity, a slower pace, a more thoughtful and reflective way of life, board/card games instead of television, crossword and jigsaw puzzles, travel, hobbies, making art(!)… those things are all available to us, and we have every right to claim them.

Hey there BB, I am a so-called mild TBI survivor since Sept 2005. My son Chris (21) filmed this talk I’ve given to a bunch of people — medical professionals, case managers, and grad students in training for Speech-Language Pathology — called “You Look Great!” — Inside a TBI. It’s more or less the starting point for the book I’m writing of the same title.

He has posted the 1st 5 parts on YouTube. Part 6, the finale, should go up shortly. We’ve received wonderful and encouraging feedback from survivors and their spouses and caregivers about how the video helps them describe what they’re going through too.

Was wondering if websites like these ( Brain Games ) help with improving brain functions after having mTBI? I keep reading how they are good for everyday life and not just mTBI but wanted to get peoples opinion.

THERE IS HELP THAT HAS RETURNED SOME PEOPLE TO TOTAL FUNCTIONING!! Of course, just as in life, there are no guarantees. Dr. Mary Lee Esty has developed an incredible treatment modality for PTSD and TBI, along with fibromyalgia and autism!! I read about her in the Washingtonian magazine here in Virginia in 2005. The article was about how she helped a teen-aged boy and about the author’s experience with her improving her memory. So, I immediately made an appointment. I have been shocked at the results! I injured my head again, and went back in February. After a discussion with her, we decided to do her protocol for PTSD – with AMAZING results! My memory is back to being terrific – including remembering my phone number from when I was a senior in high school – 40 years ago!!! And my depression has lifted enormously AND my anxiety has become minimal -after my mother dying AND my significant being treated for cancer!!! AND my ADD has improved tremendously!!!!! I can’t believe how different my life is in such a short time!!! AND all for less than $2,000! Although, I would have paid anything for these results!!!

I have suffered depression and anxiety for most of my life – including Seasonal Affective Disorder. I was on the highest dose of two antidepressants and have cut them down by 2/3!! So, I think, no KNOW, that Dr. Esty is a miracle worker!!!

IMPORTANT INFO: There are at least two types of neurofeedback – the other one I learned about helps you manage brain waves. What she does is entirely different. The best way to learn about her, her modality and results is on her Website:

After my tremendous success, I really want to get the word out that THERE IS TREMENDOUS HELP AVAILABLE!! In fact, the US Army has been so impressed with her results on two of their employees that they have asked her to propose a study that they will fund.

By the way, the biggest difficulty in performing any studies for PTSD is that it is very difficult to find participants!! So, if you know any veterans from Iraq or Afghanistan who could do treatment for 10 weeks or so in Bethesda, MD – please send them my way!!

But if you have any questions for me – I will be happy to answer them as best I can!!

BBrilliant this is a useful blog. So many others are there just to say “gee that’s too bad” you seem to be out looking for information to pass along. I suffered a TBI in high school when people (not even doctors) knew what it was. Riding fast on my bicycle I crashed into the sidewalk and woke to a doctor shooting painkiller into my face. He stopped counting after fifty stitches. I healed went on with life and no one noticed that I was different. Until after I graduated from college went through corporate America and was found on a sidewalk with a TBI no one could miss. I am told I was probably mugged. Now after countless brain surgeries, a truck load of drugs, and a VNS I am diagnosed with neurosarcoidosis. They don’t know how to cure it but with the latest drugs they can keep me sedated down to one seizure a month instead of four a day. I am going to find out how the brain works and you can help.

Thanks and welcome. You’re absolutely right, that I’m out looking for information to pass along. I have spent way too many years struggling (often without realizing to what extent I was having trouble), only to be told I was either lazy or stupid or I wasn’t trying hard enough. If only they knew!

Anyway, that’s all water under the bridge, and I now have access to some great support folks who help me with getting the right information. I’ve read a little bit about neurosarcoidosis, and it sounds like quite a trip. One seizure a month instead of four a day is a good thing.

By all means, do find out how the brain works. I picked up a copy of Netter’s Atlas of Human Anatomy and I have been studying it. I believe there is also a Netter’s Neurology, which I may get this holiday season, but I like to have a full view of the whole human body, so I went with the whole atlas. It’s fascinating.

Along my path, I have found a lot of folks — especially experts — who have discouraged me from digging too deeply into my own condition and the medical literature about it. I appreciate their wishes to protect me from confusing facts which I may or may not understand, but I have a keen and abiding need to know as much as I can learn, and to understand the things that directly impact my life, so their discouragements have been more annoyances than hurdles for me.

Knowledge is power, and the more you know about your own condition, the better you’ll be able to advocate for yourself. Good luck with your quest. It’s well worth it.

Dear Icebreaker in the North Pacific. It is tough getting to the arctic circle. Everybody Else wonders why you want to go there. Backing up and breaking through the ice again again again is hard on your bones and brain.

Hey. Somebody has to introduce frozen orange juice to the Eskimos. Don’t tell them you did it because it was there. Tell them you did it because it is in your heart. Infinitely more brilliant than your brain. Now you know. Hearts and brains can be broken and shine brilliantly.

That’s what light is for. Huh. Shine on brilliantly. Don’t watch too much TV video games. Studies show difficulty maintaining alpha and other indigenous rhythms with eyes locked and the brain running. Sheesh. How do you feel when you lock your keys in the car and leave it running.

Anyone who has ever had a pet endorphin knows how important they are. Inside ourselves we keep the secrets of healing. That’s what life is for. Who needs a miracle medical cure. If we all had the same cure we’d all be the same. Then there would be no way to see that broken brilliant light shine.

Thanks for being so bright. But don’t get too close. I might get blinded. I’m already deaf inside. I’d like to see your words in my brain a little longer.

Hi there!
I wanted to commend you on your courage, to step forward. I also am a corporate professional, who hides behind a mask. I just do not get it, a person who is a cancer survivor is a well accepted, mainstreem hero. Bob Woodruff is also looked upon as a hero of TBI. Professional atheletes and students who suffer ( concussions) which are actually aquired brain injuries are supported.

I am on the National Board of the Brain Injury of America, went back to school at Duke Medical U. to become an intergrative Health Coach Pratitioner, Brain Fitness Certified, Brain Rehabiltaiton Certified with high hopes to assist those like myself.

Yet, in order to do so, I must down play, gloss over and hide my MTBI challenges to be taken as a credable source. Especially around M.D.s. Therefore, I still have not opened a web portal or launched a radio talk show.

Why because of the fear of the labeling.
So I hide behind my day job in business development. Silently, wanting to assist and share knowledge.

Perhaps the medical name of MTBI needs to be changed?

I currently as a hobbie and give back to society: coach Vets, spouces of vets and those who want to learn about alternative safe treatments.

If you would like to collaborate and get any of the information on alternative medical modalities (CAM) as well as centralizing information platrofm. I would enjoy the conversation.

Many Blessings to you and all those on this site. Never Surrender!
P.S. I left my grammar and spelling errors to illistrate that we with MTBI are not perfect and have different challenges. I compensate by usually having a person read over all business corrispondance.

Thanks so much for writing – what an amazing service you’re providing.

I hear you about the labeling. It’s why I keep my identity concealed. In the professional world, I don’t have much hope of people understanding or extending themselves to help me out in those instances when I need it, so I keep all of this to myself. Even with family members, it is difficult. But we do what we can, I suppose…

The world needs more people like you. Please do stop by again and keep writing. And if you wish to share your story, that would be great.

Hey there. I’m trying to come around a bit and “communicate.” I responded to you and also added you to my Blogroll–just so you know. *grin*

Also about the VNS…heh. Remarked about that over at my pad. Maybe we actually do have the non-invasive in Canada? I’m seeing my Neuro soon so he and I can have a chuckle about my wacky head and some surgery.

You and I should review (or you can read about it), what happened after my tonic-clonic. I became an epileptic rat. I pretty much found that was the only place they discovered it…not so much in humans? Thermoregulation issues. Unreal. I don’t even know if I have a hypothalamus anymore.

Non-invasive VNS? Not sure there is such a thing, mechanically speaking. Believe the only official way of doing it is to implant something under your skin and then give you a magnet to wave in front of it, in case things start to …. turn. They’re recommending it for people who are depressed, as well.

Why have a $30,000 (US) operation, when you can breathe deeply and stimulate your vagus nerve? There’s not much money in deep, controlled breathing, I suppose.

I’m not sure what you’re talking about with the thermoregulation and “rat” reference? Couldn’t find it in your blog — probably looking in the wrong place. Refresh my memory, if you will…

I just found my way to your website and so far I am delighted with what I have found. In a neurological nutshell, that part of my life includes a fractured back in a high school lacrosse game which would effect my neurological condition years later, two severe car accidents (one which briefly left me in a “coma like” state and the other with post concussive syndrome), a parietal lobe menigioma (a brain tumor) resection, a brainstem glioma discovered a year later (with a grim prognosis), a few years later a cerebro spinal fluid cyst developed in my brainstem and I needed the first of two shunt placements to slowly drain the fluid, but not stop the flow or another cyst would likely develop elsewhere, a few years ago I had an ischemic stoke and I lost my vision in one eye and the hearing in one ear.

All that said, with many details missing, I have not just been looking for a site about TBI and ABI (I am a member of both clubs) for quite some time. Just like a GPS system in your car, one that “recalculates” when it encounters a roadblock on the path it was originally taking, “Recalculating” is a concept that describes what I have been forced to do in cognitive terms so many times and it is one in which my friends can quickly grasp a nebulous concept and integrate it into a broader understanding of my “invisible disability”. Complaining about the deck of cards one has been handed gets so very old, quickly. “Recalculating” emotions, cognitive retraining, social interactions etc. seems a far more productive use of ones time here on earth. Finding your site so far seems to offer a plethora of “recalculating” information that I will be referencing for some time!

What a ‘ride’ you’ve been on — pretty amazing. I really appreciate what you say about “recalculating” — I’ve been thinking about my life in those terms a bit, lately, too, tho’ I haven’t got a GPS.

I tend to think of it like heading down a road in the jungle, and finding a tree has fallen across my path — a very large tree, one that my machete won’t cut through. So I have to take the long way ’round and blaze a new trail for myself.

Thank you, thank you, thank you! You are so right in everything you say. I had a global brain injury over 3 years ago, and was given grim chances of much recovery. I was seriously mentally impaired., could barely talk (think drunken slur), and somewhat physically impaired. I could live independently, but just emptying the dishwasher was an accomplishment and made for a good day.

Western medicine was of absolutely NO help and had nothing to offer me. As my mental capabilities improved, I started doing my own research and deciding on my own therapy. Through the miracle of neuroplasticity and such practices as neurofeedback, hyperbaric oxygen therapy, acupuncture, cranial sacral massage, hypercapnia, visualization, meditation, cross lateral movement, bikram yoga, daily cardiovascular exercise and more, I have made a remarkable recovery and continue to improve. Much of it I have done on my own at home. You do not have to go to therapy. I still do brain training and manual dexterity exercises and cardiovascular exercise and my own speech and more daily. It is up to YOU not some medical staff.

Read more about my experience at my blog http://thebestbrainpossible.blogspot.com. Thank you for sharing your information and being an inspiration. Keep going and keep working at it every day. It only gets better.

Nope, you’re not being stupid – I am 😉
I just added a “subscribe to this blog” widget in the left column, so now you can click a button and subscribe.
Not sure why that never occurred to me before.
Sorry… as you said… brain injury 😉
Thanks for writing
BB

HI BB! I had visited your blog before my computer issue days and lost the link to it! (just found it again today!) If you dont mind I will add you to my “hero list’ on my blog. I am a caregiver to 3 survivors… my son, my husband and dad.
My biggest struggle is with people who look at our family and dont get that there are still major daily struggles. And like genuinesunshine said ‘a person who is a cancer survivor is a well accepted, mainstreem hero. Bob Woodruff is also looked upon as a hero of TBI. Professional atheletes and students who suffer ( concussions) which are actually aquired brain injuries are supported.’ My son and hubby are severe survivors but most ppl dont understand what we go thru because they dont look “different” or have ‘publicly visible medical routines’ such as chemotherapy. There are no casserole brigades when we are having a hard day, there are no offers to help out with the rest of the family when my survivors are not on top of their game… It is hard to share with people the issues we deal with because no one can see them physically. There is no ‘medical timeline’ to follow or to prepare for…
Thank you for your writings!

Thanks for your words, and I don’t mind at all if you add me to your ‘hero list’ 🙂

It really is a challenge handling the day to day issues, without public support. The more I think about it, the more important it seems to me that we see our experiences acknowledged and mirrored by others. Hearing others talk about the same hidden difficulties you have, has a way of relieving a lot of pressure. It’s easy to feel like you’re losing your mind, when you aren’t feeling recognized, and people around you are constantly saying that “you look fine”. I think that people sometimes think that is supportive, but ignoring and minimizing the things we have to overcome just makes things harder, I think.

Good luck with all your work, and thank you for sticking by your 3 survivors. Hang in there!

The human body is mind boggling. Look at all of the components inside one body and try to figure out how it possibly all works. What’s even more cool is that we have nearly two of everything in case something shuts down. This being said, it is still vital to exercise and to eat right. Just because we have two of everything doesn’t mean we should abuse it!

Just wondering BB if you would mind me posting your blog on our FB page Canadians with Traumatic Brain Injuries. I think a lot of what you write may be of great interest to others!
I would post the link to your home page…
Thanks.

Excellent site for traumatic brain injury. I suffered many TBI, and when given a proper history in our healthcare system I have been discriminated against. Actually, no one believed me. Hence I was not treated with a subarachnoid hemorrhage and many physical complications that go along with that…the one injury I did not recover from. Anything that happened after the subarachnoid hemorrhage was blamed on pre-existing conditions that were never there to begin with. I probably lived because I wasn’t treated! Who is to say that the treatment given is the correct treatment? If it weren’t for my strong sense of well being and healthy choices and exercise I would never have made it through this last event 20 years ago. But, nothing prior to this was debilitating, but then again they didn’t include subarachnoid hemorrhage brain and spinal cord injury either. I have a strong body…and a strong mind (I was just told). So being a healthcare professional I would not encourage individuals living with TBI to reveal everything in a health history. It’s the same as psychiatric conditions. No one understands the condition, so it’s a stigma. One needs to be treated and not labeled. The information is not used to help, as I once thought. It can be more harmful then helpful. Don’t get fooled into revealing too much. Trust yourself and protect yourself.

True, true, true. I have always felt it was a mistake to reveal too much about my past injuries. Unfortunately, I’ve had to “go on the record” to get help, because of insurance issues. And I’ve got an official diagnosis of late-effects from prior traumatic brain injury. At the time I had that diagnosis and “went on the record” I thought it would help, but you’re right — in some ways it has worked against me.

It is very difficult to know what to do. You need help, and you need to disclose some things to get help, but at the same time, the people who claim to help … often don’t. Or they can’t.

It can be pretty intimidating, dealing with everything. It’s just too bad that so many of us find out — much later — that we would have been better off relying on ourselves all along.

The best we can do, is spread the word that recovery is possible, and that things can get better.

I am working on a project for Traumatic Brain Injury Awareness month in March and we are asking people to share their stories in video form for our YouTube Channel as well as join us on Facebook for discussion. Would this be something you are willing to do? And could you pass the information along to your readers? If so, please email me!

BB- someone just sent me your blog, interesting. I work with TBI within the military and much of what you say is very on. There is a lot of support out there–if you are in the right place and have had the right people see you–as you have noted–it can be quite a path to get to where someone listens and acts other than just treating symptoms–the needs are more holistic than that. The wonderful thing about TBI these days is that there is so much more media focus on it with sports, and to some extent the military impact that people are taking it more seriously.

The invisibility of the afflection is what I believe is the hardest thing about it. It is like chronic pain, the only person that really knows what is going on is the person experiencing it. A couple things–mTBI is not used so much anymore–TBI is preferred. Also, the difference between a definition of concussion and TBI are very close. Take a peek at the CDC and Wikipedia–and that is why the people working with this in many cases use the terms interchangeably. Neither requires loss of consciousness. A tool called the “Glasgow Coma Score” is often used at time of the injury/insult to determine severity by looking at and measuring events after the insult/injury.

I don’t know if you have looked at the Brain Injury Association USA (www.biausa,org)–they have chapters in most states, or at http://www.DVBIC.org –a congressionally funded group that I feel is much like a wikipedia regarding TBI–has a lot of resources, addresses for support groups that address couple’s needs, reintegration into community/society and other beneficial information. They have a lot of downloadable information. Though mainly directed to the military–I think it is a very helpful site., a third is http://www.cdc.gov/traumatic brain injury.

Nice to see there is someone out there trying to reach others that suffer and have had to work their way through the carepathways to get appropriate health.

Thanks for writing, and thanks for the great resources, too. I am familiar with some of them — the BIAA, for instance — but others I have not heard of. I think we’ve gotten a lot better about finding/pointing people to resources. The internet certainly helps.

That’s interesting about “mTBI” not being used much. It does seem like an academic distinction — mild, moderate, severe — the initial is often a terrible predictor of the long-term effects, so getting rid of the “mild” makes sense to me.

Hi bb, brilliant site, thanks so much. Re ‘mild,’ I liked a comment in a new York Times article” “there is no such thing as a mild brain injury.’ Also, for some people a mild brain injury can cause severe effects in ones life. the location of the injury is relevant. I agree with what you said at the top of this page re there being an information system problem. however, you are so right about trying tog et help and finding people dont or cant help you and sometimes screw you up even more! Ive found the neuropsychologists are the only ones who really know, but they dont do practical help for our daily lives. Watching the head of CNS rehablitation talking to gthe senate committee on brain injury recently, that gives quite a good overview. (I hope this link works http://republicans.energycommerce.house.gov/Media/file/Hearings/Health/20120319/HHRG-112-IF14-Wstate-AshelyM-20120319.pdf . Otherwise google Mark Ashley text speech senate committee brain injury, or something like that.)
Perhaps it is not always the lack of an information system, sometimes I am beginning to realise, they dont really know. and so we continue to learn, at the pace of a glacier, by trial and error, and we have our victories and we become more confident in what we know. Like you I have constantly worked hard to get educated on my deficits to help me understand and find ways around them, There is constantly discouragement, I suspect because so many of the people who help and ‘advise,’ in fact know very little themselves.

Hi Jen, sorry for not responding sooner – things have been pretty busy, but I’ll try to respond. Thanks for the link to the proceedings. It does work 🙂

I think you’re right about people just not knowing – the thing that seems to make it harder is that many times they also seem to think they DO know, so they do not make the effort to find out more or question what they believe is true.

This is an awesome blog! Since finding your blog several months ago, I have appreciated your insights and candid discussions about living with TBI. Just came across your Annotated Bibliography, Chapters, and Articles and have made a copy to include in my growing collection of TBI information. Saw that you had responded on the GiveBack LA (www.givebackla.com) website awhile back. Larry Schutz is doing some awesome work on behalf of TBI survivors. Providing free access to his wealth of knowledge as a neuropsychologist and rehabilitation expert is an awesome gift to the brain-injured community and their families, partners, and friends..

Thanks! And thanks for writing. Glad you’re finding the information useful. I haven’t checked in on GiveBack LA for a while – now that you mention it, I really should. It really is an amazing gift to everyone. GiveBack (Orlando) made a huge difference in my early recovery — just helping me see that I was not in an impossible situation, and others were/are dealing with this successfully each and every day… that made all the difference.

I find that my redundant use of an adjective increases with my level of tiredness! : )

Have you written about your experiences at GiveBack Orlando on this site? I have read “Head Injury Rehabilitation in Real Life” in which Larry Schutz relates both successful and unsuccessful rehabilitation attempts, why it works for some and does not for others. Dr. Claudia Osborn’s personal account of brain injury and rehabilitation in “Over My Head: A Doctor’s Own Story of Head Injury from the Inside Looking Out” helped me understand my own injuries post TBI. Sometimes our desires to return to what we were pre-injury are transformed into into opportunities post-injury that we may well have missed otherwise.

I was writing about reading them, when I first came across them. I have actually never been directly involved with them, but I was lucky enough to chance on their materials. I will need to check out “Head Injury Rehabilitation in Real Life” — anything from Larry Schutz appeals to me. Thanks for the tip!

This entire PAGE amazing (as is the blog) – not only because the information (from both you and the video) is so heartbreakingly charge-neutral, but also because it underscores how (can I use extreme understatement here?) **unfortunate** it is that, essentially, neuroscience is so fixated on the “science” (i.e., double-blind,placebo controlled, yada, yada) that it (extreme understatement warning!) **undervalues** anecdotal report – and we ALL lose.

The fingerprint analogy of video #1 dovetails perfectly with what I mean when I say, “There ain’t no IS about ADD!”

I am in the process of posting augmented brain-based content originally presented at a recent conference targeted to ADD Professionals. It is being presented as a new series on my ADD-focused WordPress blog. The part of the series I am currently augmenting is a segment that introduces TBI content to the ADD universe.

BOTH of our communties must find ways to prevail despite ongoing cognitive struggles that tend to be **significantly** discounted by the public at large — and pathologized unnecessarily (and through a cloudy lens) by medical professionals.

In ANY case, landing here will delay the posting of that content quite a bit. Reading this blog and watching only the first video [due to current time constraints] has forced a reconceptualization. Not only do I now want to reframe the context, I can see that my planned length is too short, BY FAR, for an important topic of this depth.

Thanks for writing Madelyn. I agree, there are a ton of connections between TBI and ADD. My neuropsych works with ADD folks as well as TBI folks and I am sure they have used a bunch of “tricks from their ADD bag” in helping me get my life back.

The intersection between TBI and ADD is pretty close — TBI often increases distractability and decreases attentional capacity. Fortunately, there are things that can be done to alter this — meditation, mindfulness, and just practicing. Keeping clear about the need to practice is, of course, a requirement 😉

Thanks for including me in your blogroll. I tried to find the original thread and failed – ended up leaving a long comment on another post instead. Technique may need to be tweaked considerably for your community – not a great depth of experience there – but if you try it, I’d love the feedback.
xx,
mgh

Sure thing – yes, I see the post. When you say “technique may need to be tweaked,” you mean the process you describe there, correct? I’ll have to think about it — and come to think of it, the way you described the process sounds a lot like what my neuropsych has been doing/saying with me for the past several years. Now it’s starting to make sense — and seem less annoying 😉 There actually is a method to what they’ve been doing. I have sort of gotten it, but not entirely until now. So, thanks for that.

I’m a fledgling Feldenkrais practitioner. I’d be very interested in working with you, if you’d like to explore somatic education.

I’m Dallas based, offering free practice lessons til Sept. 8 at Dallas Shambhala Meditation Center. Beginning in October , I’ll be offering private lessons at a special introductory rate. I’d love to work with folks dealing with TBI, look for opportunity to study benefits of Feldenkrais with this population.

Thank you for the offer Angela. I have heard about Feldenkrais, and I think it could be very helpful. I’m actually not located within easy travel distance of Dallas, so I won’t be able to take you up on your offer. However, if you are serious about this, I encourage you to reach out to your local Brain Injury Association office and offer your services to folks in real need.

Funnily enough, it turns out one of my new students in my group classes is in recovery from brain trauma. I just gave him a practice lesson. I’m going to add your suggestion to my to-do list for October. Thanks!

So,…
Below is an ‘off-the-cuff’ message I wrote to the Sports Legacy Institute after hearing one of their staff members on a local radio morning show while I was in MASS.
I have done some websearching for departments and programs; I’ve sent letters and inquiries to many researchers and doctors, in hopes of finding someone with whom I can share and learn from. I have not, until today, really explored contacting other survivors. This message here is the first of such attempts. Frankly, I have not contacted other survivors because I have …….. forgive me but it’s been a few minutes and I’ve typed and deleted a number of reasons and none of them are legit. Not completely, at least. I suppose it’s a weird emotional fear of something that’s kept me from exploring that/this avenue.
Anyway,…there’s a lot there that I can process and explore more another time,…but I thought I’d put my toe in the water and share *something* here. I thought I’d share what I’ve shared before and start there.
I haven’t read very far into your blog but I appreciate that it/you exist and thanks for prompting me for sharing this:
Onwards, eh?!
Cheers and all my best,…

*********
I’ve spent years not talking to anyone about my own injury and experience and, with the increase in attention and awareness I need to find the opportunity to tell my story. I need to find the opportunity to learn, not only what happened to me then but, with the research coming out, what I might expect for my future.
In 1987, at the age of 15 and while playing ultimate frisbee during a high school gym class, I was kicked in the left temple while diving to catch the disc. I was knocked out for a few seconds, give or take, but was actively encouraged to get up and keep playing.
The coach of the class was also the head basketball coach and it happened to be the day of the final cuts for the team. Myself, it was the first year of high school and I was an “up and coming” player.
You do what Coach says, right? If you want to make the team. If you don’t want it worse.
I suffered through the following hours before loosing consciousness again, this time after starting layup drills.
They brought me to, called my mom and put me in the parking lot for her to pick me up.
I tried to return to school the next day and “zombied” through a few hours before needing to leave school.

There’s a lot of story here but after going through a handful of docs that did not have the awareness to handle me correctly, we ended up at Children’s Hospital in Denver, Colorado. The neurologist with whom we were able to make contact was not on staff at Children’s but was sitting in for a colleague on sabbatical. Thank goodness, honestly.
Dr. Ellison was her name.

I’d need a bit more time to go into why she was perfect for me, and for my mom, and why her support and advice led to my having the life that I do but suffice it to say here, her suggeestion to NOT get involved in therapy, to NOT associate myself with the TBI infrastructure that was in place at the time, was the right call. No question about it.
That said, my not getting exposed to those programs left a 15 year-old to deal with, not only the trauma of my physical experience but all the complications and trauma of having to deal with the effects of the injury and society – friends, school, … the whole of the ‘outside’
world.

I have a story to tell and I need to find someone with whom to share it. More so, perhaps, I need to talk with someone that can help me more/better understand what happened to me,…what condition I’m in today and, with the rates of dementia, etc. we’re expecting to see in the coming years, I need to know my exposure and what I can do to stave off any increased risk for future impact.

Is there anyone there that can either play one of these roles or can direct me to another agency, researcher or person that might be able to “use” my experience and story for their own work? Until next Wednesday, I happen to be in the Boston area and would be happy to pay a visit if anyone could be available. I should say that I live in Alaska now so being here right now might be a great opportunity for me to pay a visit.

Thanks for writing and sharing your story. I have heard a fair amount about the Sports Legacy Institute, and what they are doing with the NFL.

And yes, finding someone to share your story with would probably be valuable – for a lot of us. I personally got involved briefly with a “live” brain injury support group, and I attended a few meetings, but I eventually pulled away for a variety of reasons. We TBI survivors can be a curious lot, and I felt like I had enough on my plate, dealing with my own issues, let alone everyone else’s. So, I have more or less soldiered on alone, except for help from a neuropsychologist I meet with weekly, and of course this blog.

As for your future prospects, I’m not sure what to say about that. I, too, am concerned with dementia, and lately I’ve been having more pronounced issues with my memory, so of course the warning bells are starting to go off. I try to keep calm, and my neuropsych does what they can to allay my concerns – they don’t seem particularly worried, but then they don’t seem to realize all the many times I got hit in the head over the years — pretty much as a regular part of life and play.

Personally, I am doing what I can to keep the grey matter viable by really using all my faculties as much as humanly possible — really living, and living as well as I can, taking in all the sights and sounds I can tolerate… ideally interspersed with ample rest, of course. I figure, the more strong synaptic connections I create now, the longer it will take them to break down. And if I keep building up more, I may even get ahead of the game.

Good luck with contacting someone in Boston. Let us know how it works out for you.

I just read the post by Anonymous and would like to recommend to this reader that s/he visit http://www.givebackla.com and read through the article “Why People Don’t Understand Me” written by neuropsychologist, Dr. Larry Schutz. I know BB is familiar with his work and GiveBack self-help therapy program for people living with TBI. (Dr. Schutz can also be reached at the number given for his practice at http://www.larryschutz.com) The Giveback site gives you the opportunity (if you so desire) to start up your own support group and supplies the necessary tools to get started…and it’s free.

Living with a brain injury can be a bumpy, unpredictable journey. Reaching out to others is a positive move. I prefer to take each day as it comes. I keep my medical record updated/ current in the event that symptoms like unpredictable outbursts, depression, etc. should surface in the future. We sometimes forget that background information is essential and people with brain injury often forget to mention their injury/injuries when filling out patient history forms. My friends know my history so I feel comfortable letting them and others know when I have to rest or reduce my activities for a time.

BB’s recommendations to eat well, get enough rest, exercise, etc. are all good advice. Social interaction with others is important, too. Isolation tends to make us think too much, get worried about future ‘possibilities’, and can take the joy out of living. All the best…

Hello Broken Brilliant,
It has been several years since we communicated. I hope you have and are doing well. I have been busy with Second Chance to Live. If you have a chance I would invite you to stop by to visit with me my friend. http://secondchancetolive.wordpress.com/. I have added you to my blogroll in my left side bar. If I can be of service in some way, please let me know my friend.

Thank you for getting in touch again. I think video is a great way to reach a lot of people – also, if you put a link to your website in your YouTube description, it is easy for people to get to your site and find out what else is there to read.

You have a lot of great things to say, and I appreciate all your work you do to help folks better understand and deal with their lives.

I hope you have been doing well. Thank you so very much for suggesting that I add a link to my web site in my description portion of my Channel Settings my friend. I also added some Tags to this area. I am not very savvy with regards to creating tags that will attract and be inviting to people that are searching for videos such as mine with content to encourage, motivate, empower and instill hope. Do you have any suggestions my friend?

Also, would you suggest that add a link to my web site in the description portion of all of my video presentations? I have a description of my video presentation in the description portion of the video presentation (s). Some are short, other summaries are longer. I do not know if I should put the link at the beginning before the summary of the presentation or at the base of the summary. I am not sure if people take the time to actually read these summaries and subsequently scroll down the description portion of the presentation to find my link to Second Chance to Live. Do you have an opinion my friend?

Also, I find that the links that I put in my description portion to my articles do not appear to be highlighted which indicate that they are live and upon clicking will open the link. Do you have any suggestions as to how to adjust this linkage?

Thank you so very much for your email. I create video presentations of my articles to empower individuals who learn better through watching and listening. Currently I have 116 video presentations that I have created and uploaded to You Tube. I have created a Site Map for my You Tube Video presentations. Here is a link the list of my presentations in my Site Map my friend http://wp.me/P3atD-3B3

Yes, I would recommend you putting a link to your site at the top of your YouTube description. That way people can see it right away. I’m not sure about linking it – you could look in Google to see if others can tell you how to do that.

Thank you so very much BB. I have done so and added several other url’s to my You Tube channel https://www.youtube.com/user/2dogbull. Check out what I have done per your suggestion and let me know what you think my friend.

Happy Brain Injury Awareness Month! I think this is a time we should celebrate great resources like your blog. I posted a link to an infographic I made into the link portion; please check it out and let me know what you think! Thanks again for the great resource and good luck in your journey!

Greetings, I’m Taren and I’m really pleased that I
stumbled on wordpress.com. I had a quick question which I’d
like to ask if you don’t mind. What do you do to clear your head and find your center of focus before you sit down to write? Recently I just can’t get my head clear so that I’m ready to work on my ideas. I love writing once I get into the act, but most of the time I feel as if I end up wasting the first ten to fifteen minutes driving myself to focus. Do you have any advice or tips?

Thanks for writing. Getting started with things is something I have a lot of trouble with, myself. Ironically, getting started writing has rarely been an issue. I have written for a long time, and I have kept journals and written stories and essays since before my teen years. In the past, I also did technical writing. It is usually a pleasure for me – but now and then I do get stuck and can’t get started.

Here are three things I find helpful with getting started writing:

1. Create a separate space for my writing – a sanctuary, where the rest of life does not intrude. Jane Austen used to write in the sitting room of her home, sharing her writing with her family members. I could never do that. I need a separate space on my own. Different people have different styles, but I need my privacy.

2. Have a ritual associated with writing. I always use the same kind of pen when I write by hand. At my computer, I have my coffee on my right, and my music or my breakfast on my left. My writing is a kind of refuge for me, a way to shift away from the stresses of daily life and get some perspective. So, sitting down to write isn’t intimidating. It’s a friendly situation.

3. I generally write at the same time every day. Early mornings have turned out to be my writing time — my TBI in 2004 pretty much hosed my ability to think clearly at the end of a long day. When I was much younger and had a lot of free time (and energy), my writing time was between 10 p.m. and 2 a.m. Having a set time when I do my writing keeps me focused and disciplined by nature, and it makes it into a habit, rather than something I need to push myself to do.

Here are three things I find helpful with getting started with anything:

1. Plan ahead – I think about what I’m going to do later, when I’m not yet doing it. I see myself doing it, I imagine how it’s going to feel, and I imagine how good it’s going to feel after I’m done. That makes it something to look forward to, rather than dread.

2. Block everything else out – it doesn’t matter if “it matters” or not. If I need to do something, then I do THAT, and I put other things aside until later. It’s my life, I can do what I please. Other people and things and distractions will just have to wait. If I need to do something important, then I say “no” to everything else till that important thing is done.

3. Take a walk. Or do something physical. Nothing clears the head like a good walk. In fact, I’m going to take one in a little bit, after I finish my breakfast and morning blogging. Exercise helps me think — and according to research, it does the same for a lot of other folks. Even just stretching or doing something physical can help clear the mind.

We absolutely love your blog and find the majority of
your post’s to be exactly what I’m looking for. Does one offer guest writers to write
content to suit your needs? I wouldn’t mind publishing a post or elaborating on many of the subjects you write in relation to here. Again, awesome website!

Hi – thanks for writing. Sure, I’m open to guest content. What you can do is write something in the comments here, and then I will check it and if it is a good fit, I will post it as a regular post with attribution to the writer. I do ask that the writer qualify themself as a brain injury survivor, just so we know folks are on the same page as us.

Love the blog – my husband has a TBI from a skiing accident in college and we have both found your blog to be a great tool for us to discuss some of the TBI experiences. Can you tell us more about how TBI impacts your relationship with your wife? Maybe she could be a guest blogger here? Also, do you have kids? How does your TBI affect parenting?

Thanks for writing. I’m glad you’re finding this useful. My marriage has been both sorely tested and also strengthened by this TBI business. When my spouse and I first met, I had no idea that all my issues were neurological from a long history of repeat mild TBIs. I just figured there was something wrong with me, and I should be happy to get what I could get. I’m very fortunate that I found a life partner who is a great match for me. Both of us agree that we’d probably drive anyone else crazy 😉

Over the years, I have found myself willing to tolerate some pretty intolerable sorts of behavior from them, because I figured I didn’t deserve better. For years, my spouse had to yell — really *yell* — at me, just to get my attention. Other people thought they were being verbally abusive, but in all honesty, I hadn’t yet learned how to listen attentively, and I was usually so distracted by, well, everything, that they *had* to yell at me. At the same time, it does kind of wear on you, to have someone hollering at you all the time, so that didn’t help us much.

When I figured things out and started to get help for my TBIs, my spouse at first was very supportive, but they got tired of the whole “recovery thing” pretty quickly and they just wanted to go back to how things were. Not because it was better that way, but because it was familiar. Maybe that made it easier for them.

We have been through a lot of ups and downs in the past four years, and we almost split up, a couple of years ago, but they got some counseling and they have been figuring things out, so we have stayed together. I guess they decided I was worth the trouble, after all 😉

TBI can be incredibly hard on the spouse, who cannot see what is going on inside, and because a lot of us try to hide what is going on — or we just don’t understand, ourselves — it doesn’t make things easier. I have close family members who have experienced stroke, so I have something to compare it to. I think keeping your sense of humor and not getting too “heavy” really helps a lot. Treating life like an interesting adventure, rather than a chore to be endured, is a skill that not everyone has, but is definitely a plus.

We don’t have any kids, which is fortunate, because they probably would have been taken from me long ago. I have had long periods of time in the past, where my temper was uncontrolled and extreme, and I would lash out physically and without much warning. I never hit my spouse, but I have had pets that actively avoided me. I can’t say that things would have been good for my kids. They definitely would have needed therapy. So, I can’t really speak to parenting, other than that I’m glad I never had to find out the hard way.

Sometimes I regret not having kids. But then I remember the way I have been in the past, and I’m glad I chose to not have any.

As for guest blogging, my spouse does not know about this blog. I keep this very confidential, so I can speak freely about many issues, some of which my spouse would not agree with. It’s easier this way.

We wanted to reach out to some other groups that are raising awareness about PTSD. We are “Wounds That Don’t Bleed”, a group of people dedicated to bring to light the tragedy of PTSD and the effects it is having on both active duty soldiers and those who reside here in the states.

If you could mention either the video, our Facebook page or our website with your group of dedicated people we would greatly appreciate it. We are all committed to the same cause and would love it if our video was able to help the PTSD cause.

My brain injury was the result of a non-normal, three day delivery years ago which involved the doctor telling my mother that a single child was expected only to be revised (due to an xray which revealed two bodies) to twins. I was delivered by forceps resulting in a visible brain injury to my head. My twin brother is normal. I was diagnosed with Organic Brain Syndrome which today can also be stated a little more precisely as Inattentive ADHD, auditory processing, and dyspraxia. For some reason I am quite sensitive in a positive manner to coffee, caffeine compounds (Tirend, NoDoz) which temporarily improve (for about 4 hours) large aspects of the following for me: alertness, paying attention, sustained attention, working memory, visualization as in converting a written word into a mental image, and consciousness. In my case, caffeine (as in coffee, Tirend, NoDoz) for me works far better than other popular medicines like Ritalin, Dexedrine, and Adderall. Ritalin, Dexedrine, and Adderall do not work for me but caffeine definitely does. Can anyone relate?

By the way, I am very aware that I prefer the right side of my body (nominal) to the left side of my body (very slight weakness/very slight hemiparesis). I appear to others to walk normally, however, under certain circumstances such as skipping, hopping, using a jump rope, even turning around in a simple circle, glitches show up. Like many persons with known brain injuries, I look normal.

Thanks for writing – I can really relate to the positive effects of caffeine. If it didn’t disrupt my sleep so much, I would drink more of it. But at least it’s good for the several hours in the morning and early afternoon that I can have it.

When I originally left a comment I seem to have clicked the -Notify me when new comments are added- checkbox
and now whenever a comment is added I get 4 emails with the exact same comment.
There has to be a way you can remove me from that service?
Many thanks!

Thank you for finding me in this world of social media. I look forward to exploring every square inch of your blog. I’ve never hidden the fact that I have sustained a succession of serious concussions leading to TBI. I continue to seek out ways to live a full and active life at 68. Thanks for being here and I’m now going to get on with reading blogs, etc. Take care.

Thank you very much – I sometimes wonder what it would be like if I just let people know about my situation. But that doesn’t bode well in my occupation, which relies heavily on peak brain performance. Oh, well… so it goes. I look forward to reading more from you.

Hey, I’m not really sure what to say here, but I’m lost. I need help, and it’s not like I’m not being supported in ways that I can never be more thankful for, it’s just no one understands. This is the first time I’ve tried to reach out to someone who seems to understand, and I’m a little nervous and have no clue what to say, so if you see this and have the time to talk, send me an email, please. I don’t want to hurt those trying to help me anymore but things are getting worse, I just want someone to talk to.

Thank you for dropping by my blog. I’ve spent the afternoon watching the videos you’ve posted and they’ve helped a lot. From the first moment of my husband’s injury, I have felt lost and completely unprepared and inadequate to the task of doing what’s best for him. In the ER, I was surfing the Internet trying to learn as much as possible, trying to watch the doctors and the nurses, trying to anticipate his needs, trying to decide: how serious is this? After he was discharged we found a joke of a neurologist, who barely even examined my husband. Now, I think we are finally on the right track. I have him in with a new primary care physician. He just had an MRI last Saturday and we’ll find out the results of that tomorrow. On some days he seems like he’s doing really well, but he has triggers and bursts of rage. I’ve never see him like this. It’s hard to consistently remember that this is the brain injury. It’s not him. It’s not me. And I try to remain calm and guide him back and then he cries. People I know don’t get how serious this is or that he could have died that day.

I liked the part of the video that had the tips for caregivers. So far, it seems like I’m on the right track. His diet probably could be better. And he reads quite a bit. I don’t want to say anything because he seems happy. But I do try to remind him to take it easy. Not to push it. To rest and to sleep.

But anyway, thanks for all the work you’ve done on the blog. I’m sure I’ll be stopping by again to learn more. I’m glad you’re doing well.

Ahoy!
We had a few Tweets, back-n-forth this morning,… And for context, a few years ago, when I was having my ‘second’ ‘TBI coming out’, I did so very early by responding to one of your posts in your blog here … 2-3 years ago, I believe,… I also have before shared https://warmbeverage.wordpress.com/2014/10/22/an-interesting-experience-for-me-today-a-first-or-yes-you-promised-to-help-me-with-my-education-no-you-will-not-disrespect-me-2/
… again, for a bit of context,… no need to re-read any of them, only offering to re-introduce, etc., and as inspiration or interest necessitates! 🙂
Anyway,… a current thing, is related to http://www.dailycamera.com/cu-news/ci_29295786/return-learn-cu-boulder-valley-partner-concussion-recovery … which is/was “my” school district (when I was kicked in the temple in that gym class, etc.).
Even though we become “conditioned” to & for it, it’s still shocking, how real people are treated,…respected,…and shown such disrespect,…
I’d like to try to share how I’ve reached out to them, who I spoke with, what was shared,…and their reaction. Not vindictive, *at all*, not trying to “get back”, or necessarily ‘get’ *anything*,… but, know what? They don’t even seem to want to acknowledge that I even exist(ed).
What their ‘new’ program says they are all about, per article, is *exactly* what I got to experience, even more brilliantly than any could have forecast or imagined,…& because of that, it seems, what worked is *still* too much of an anomaly to include in even their overtly stated goals.
I don’t expect the ‘authority’ to get it, to ‘get me’,… but don’t parents & students, siblings, etc., deserve to know? I would have, … my mom and family would not have had to have suffered as they did, had we even had ‘the story’ of “possible”,…ya know? Of course you do.
I don’t want to ‘get back’ at anything, anyone, etc. They are wrong to ignore or disregard me due to fear or threat. My import is clear, I don’t & won’t yield,… WAY more can happen and is possible for people, for survivors and for everyone around them, … and willful-blindness with concussions (& concussive events) causes exponential suffering, trauma, confusion and pain.
Were it any other school district,… but, it’s not.
Sincerely, no axe to grind – my feelings are respectively hurt, yes – why shouldn’t they be? Being told again and again that one doesn’t exist, shouldn’t exist, has amazing experiences amazing enough to be unbelievable even for those implicated in playing their roles to make it happen – yeah,…emotionally, etc., it has been a process to learn about, to *feel* it, etc… But, no, all this isn’t about ‘my feelings being hurt’. This is about us. This is about people. This is about kids and parents and what is going to happen to our bodies, our minds, our relationships, our communities, etc. This is about *not* limiting ourselves and each other. This is about *resolve*, *resilience*, … about being legitimate, honest and fair with ourselves and each other, when we find we’re in over our heads, nothing is familiar or the same (even if it ‘looks’ like it),… & ‘science’, ‘best practices’, ‘protocol’, ‘guidelines’,…are *NOT* immune from scrutiny, *especially* when ‘professions’ do not match actions.

Ahoy right back at-ya. I do remember you reaching out, those years ago. My memory has clearly improved 🙂

This is important stuff. We need to share, and we need to be transparent about what we experience. Institutions like schools and workplaces seem to be so litigation-wary, that if they can minimize the threat of a lawsuit by denying the cause, well, they will. Also, from what I’ve seen and read, schools especially are notorious for failing to provide proper care and responses to concussed students. It’s frankly appalling, how lax and remiss they can be. There are a lot of teachers in my extended family, and after hearing the sad tales of administrative foolishness for so many years, I can’t say I have a lot of respect for the average school administrator — at the school and district levels.

Now, how to share your information the most effectively?

Personally, I believe that brain injury recovery is really a learning process. Our brains need to re-learn how to do things — and they can. Also, it’s a learning process for everyone involved. People generally don’t know a heck of a lot about brain injuries, when they first get concussed (or have multiple concussions, as was the case with me). We learn ALL about it, because we have to.

I think there’s a lot of education that needs to go on about our personal experiences. And part of the problem is that when people read about personal experiences and the pain and suffering that folks have been through, it “charges us up” and gets us into a fight-flight state of mind. That state of mind literally prevents reason from happening. It makes us UNreasonable, it puts us on edge, and it makes us very un-creative about how we think and talk about issues.

But reason and creativity are the only things that will really save us.

So, we need to tie our stories back to something objective — like scientific information that will support and expand what we’re saying. When we can cite independent sources for brain injury info, that strengthens our case. And if we can explain what’s happening in our brains from an “organic” or “biomechanical” point of view, that takes a bit of the emotional charge out of things.

So, here’s my suggestion. “Chunk out” your story into “bite-size” bits and pieces (e.g., “On a Tuesday evening, I was playing volleyball with my team, and I was kicked in the temple by a fellow player.” — something like that.) AND include research about the scientific basis for what happened to you (e.g., ” The impact struck the left side of my skull where the bone is soft, and my left temporal lobe was impacted.”) It takes some additional time and energy, but the more you do it, the faster and better you’ll become.

I think it will help to focus and direct your approach. And it will also be very educational for others. Plus, it will elevate the discussion above the personal accounts that are very important to hear, but can be polarizing and alienating. Just looking at the concussion discussion on Twitter reveals how emotionally charged it all is. Add some science to your account, and I think it will go a long way.

Plus, it will add to your own understanding about what happened to you — and why — and what you can do about it.

Hi, I am enjoying your blog. I have a TBI from a car accident 6 or so years ago. I wanted to ask you a question about coconut oil. Did you end up with high Cholesterol from it? I thought I read an old post about using it and that it gave you energy. I am curious because I ended up with high Cholesterol and am vegan. By the way, going vegan made a huge difference to my brain injury. It was the single biggest improvement I saw. I am still vegan but have had to lower my coconut oil. Thanks a lot for your writing.

Thanks for writing. I do have slightly high cholesterol (it was 218, last time it was checked), but that’s because my HDL is high – It’s 87, and anything over 60 is optimal. My triglycerides are also very low — 77 (normal is less than 150). So, it’s complicated (what isn’t?).

I don’t think I got high cholesterol from coconut oil. I can’t seem to find my numbers from before, when I was taking it on a daily basis. I was at 258, and my triglycerides were up, but I was also eating a lot of fatty red meat, and when I stopped that, my numbers went down a bit. I eventually quit adding coconut oil to my coffee, because I didn’t feel like I was getting a lot of benefit from it. I was also using MCT oil, which I actually liked better, although it’s a little expensive and harder to get. I am not vegan, and I found that grass-fed butter was a better “fit” for me. But in any case, healthy fats are important — even though now coconut oil is apparently not as good for you…? I can’t keep track of these things.

A friend of mine had neck surgery a year or two ago, and their thyroid and other organs in their neck were moved during the surgery. They ended up with very high cholesterol immediately after, and the surgery is the only thing that changed for them. I’m not sure if you had a neck injury (could be, if it was a car accident), but maybe that has something to do with it? It would be interesting to know if your cholesterol jumped right after the wreck. Maybe you had the same effect that my friend did?

If it’s due to your thyroid or some other endocrine issue, then coconut oil wouldn’t necessarily be the culprit. And you still need to get good fats in your diet — especially after a TBI. I was on a low-fat diet for years, and I think I was actually slowing down my recovery by not getting enough good fats. When I started adding them into my diet, my brain started working a whole lot better. I wish I’d done it sooner, but these things take time.

Since you’re vegan and you may do a bit of research about the things you eat — and why — I recommend you check out Rhonda Patrick’s site Found My Fitness – https://www.foundmyfitness.com/. I listen to her podcast sometimes. You may find it interesting. She talks a lot about diet and different chronic health conditions and fitness, etc. from a biochemical point of view.

So, that was a long way of saying, I don’t think I got high cholesterol from coconut oil. I’m not sure. And there’s more to the cholesterol story than a single number. Check out the video above and see what you think.